The interest for the University of Wisconsin–Madison study on Healthcare Experiences with Moebius syndrome has been phenomenal, but we are in need of a few more voices. The study is currently seeking participants from the following groups: Adults with Moebius syndrome ages 18-30 Adults with Moebius syndrome ages 65+ Adults with Moebius syndrome and parents of children...

Moebius Syndrome Foundation Partners with NORD® to Initiate Natural History Study of Moebius syndrome Denver, Colorado, October 3, 2025 — The Moebius Syndrome Foundation (MSF) has partnered with the National Organization for Rare Disorders (NORD) to plan and build a study to research Moebius syndrome. “As a mother of a child with Moebius syndrome and...

Share Your Story and Help Improve Healthcare for the Moebius Community! Researchers at the University of Wisconsin–Madison are conducting a study to better understand the healthcare experiences of people with Moebius syndrome. The team is looking to interview adults (18+) with Moebius syndrome and caregivers of children under 18 with Moebius syndrome. Interviews are conducted...

Apply now to join us as a speaker at the next Scientific Research Symposium in Salt Lake City, UT! The Moebius Syndrome Foundation is currently seeking proposals from researchers and physicians to discuss advancements in scientific and medical understanding of Moebius syndrome. If you would be interested in attending and/or presenting at the next Scientific...

We are excited to release our new medical binder printable! Keeping track of you or your child’s medical history can be a complex process. This printable includes places to record upcoming appointments, past surgeries, current medications, and a summary of medical history. When you’re at a doctor’s office, you’ll have all of the important information...

We are excited to announce the arrival of our new resource, A Guide for Healthcare Providers. This booklet is designed to help healthcare providers get a brief overview of Moebius syndrome and guidance on the types of specialist care a patient may require. The guide includes sections on eyes, speech and feeding, smile and blink...

The Moebius Syndrome Foundation is pleased to announce a new Medical Travel Reimbursement Program to assist U.S. families and individuals with Moebius syndrome. Traveling to medical appointments or procedures can be costly, and this program allows the reimbursement of up to $2,000 to help offset the financial burden. Thanks to our supporters, members who reside...